Hospital Care: New Standards for Infant Loss

Four labor and delivery nurses at Progress West Hospital in St. Louis have formalized a new standard of care for families experiencing the loss of a baby. Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey founded the Butterfly Kisses Alliance in 2023 to address a gap in medical protocols. The group operates as a nonprofit, providing support and resources to patients who lose a child before, during, or shortly after birth.

Hollingshead stated that while a standard of care exists for most medical diagnoses, no such uniform benchmark had previously been established for unexpected infant loss. The new protocol defines specific expectations for medical staff and support personnel. It covers interactions from office staff to ultrasound technicians, aiming to provide consistent support across the healthcare team. Hollingshead argued that families need a standard amount of care that is applied uniformly across the country.

The organization also creates physical comfort kits containing books, cards, and self-care items. These kits are mailed to families in various locations. The initiative began when the four nurses, who work together in the same unit, recognized the emotional toll of caring for grieving mothers. "We grieve with these families because we are there with them through the worst day of their life," Hollingshead said. She added that the nurses entered the profession because they care and love hard.

Kelsey Fussner experienced this new protocol during her stay at Progress West Hospital in 2023. After a miscarriage in 2021 and a successful pregnancy reaching 38 weeks in 2022, Fussner learned her baby had no heartbeat at 38 weeks and three days. The diagnosis came during a final appointment before a scheduled C-section. "The ultrasound tech just looked at the doctor and shook her head," Fussner recalled. She waited eight hours for surgery to deliver her daughter, Nora.

Upon leaving the hospital, the nursing staff provided Fussner with a weighted stuffed elephant. The animal was stuffed to the exact weight of Nora, which was eight pounds and 13 ounces. The staff also packed a comfort kit with memories of the infant, including a hospital blanket, footprints, a necklace, a homemade quilt, and photographs in the outfit intended for the baby's discharge. Fussner noted that the photos are her primary memory of Nora. "They took lots of pictures, which I hold so dear to me," she said.

Months later, Fussner became pregnant again. She delivered her daughter Abigail by C-section on April 10, 2024. This date coincided with the month and day Nora had been due. "I felt like this was meant to be, that this was Nora’s way of saying she is with us," Fussner said. The Butterfly Kisses Alliance continues to provide online resources for parents, siblings, and grandparents, including advice on physical changes after loss and ways to honor a child.

The alliance’s work includes specific materials for fathers seeking to honor their child and for mothers managing physical changes. The organization offers these digital resources even when in-person support is unavailable. The group maintains a website where families can access materials or make donations to the cause.